ALZHEIMERíS - A PERSONAL TRAGEDY
There was nothing special about my Dad, he is just like any other in the world. But to me he is an extraordinary man and an exceptional father who has used his experience to make it possible for me to lead a normal life despite being born with several severe disabilities. The tragedy of Alzheimerís Disease can strike anyone at anytime and the devastation it causes is real and frightening.
The passing of the Second Millennium meant nothing to my Dad. He was also unaware that his 92nd birthday fell in the same year. Sadly, although Dad's existence continues, meaningful life ended for him four years before, eaten away piece by piece by Alzheimer's Disease.
A Difficult Beginning
Jesse (he always preferred Jess) was born 16th August 1908, third child of Joshua Boswell, coalminer and well-known local footballer, and his wife Annie. They lived in a relatively new rented terraced housing built in the Nuneaton suburb of Stockingford by mineowners keen to attract workers to the new mines opening up in the area at the turn of the century. The Boswells, like many others, emigrated there from the Black Country. Their first child, Lily, was born in 1900. When Jess came along their second daughter, Annie, was still breastfeeding. There was insufficient milk for both babies and consequently the younger was weak and undernourished. As he grew he was unable to walk or support his weight and his mother was forced to carry him around, struggling over two miles to the nearest doctor's surgery. Eventually the doctors, overwhelmed with war wounded, told her that they could do nothing for the boy and she should sit him quietly in a corner and let him die.
Despite this unpromising beginning Jess has been physically fit and healthy all of his adult life, although until Alzheimer's overwhelmed him his weight never exceeded nine stones. The turning point came at the end of World War One when an ex-regimental sergeant major was appointed as physical training instructor at Jess's school. The boy reacted very positively to this man's militaristic no-nonsense methods and quickly transformed himself from a totally dependent weakling into a dedicated fitness fanatic. Upon leaving school and becoming apprenticed to a local barber he soon saved enough from his meagre wages to purchase a set of "Mr Universe" muscle building equipment.
Jess loved driving, although he was in his forties before he could afford to own a car. He soon became disenchanted with hairdressing and during the years preceding World War Two he earned his living driving coaches, taxis and lorries. Shortly before war was declared he enlisted in the Army as a lorry driver and after signing was told to await further instructions regarding an interview and medical. He never heard from them again. Presumably his past medical history had caught up with him.
Instead Dad saw out the war working as a semi-skilled toolmaker in Coventry. He immediately joined the Home Guard (Dadsí Army) and after initial training, during which he developed unsuspected sharpshooting skills, he earned rapid promotion to sergeant and was set to teach rifle shooting to new recruits. With misguided enthusiasm one of his men holed a RAF Lancaster Bomber as it flew low over Coventry at the height of the blitz. The understandably angry pilot filed a complaint, the War Office demanded an explanation and Jess had to provide a full written report in triplicate without the benefit of carbon paper.
At the time Dads' army was issued with wooden mock-up rifles for drill practice. My elder brother recalls he and his pals playing with these, transforming the street into a pretend drill square. After the war Jess returned to lorry driving, before an entrepreneurial urge led to a greengrocery business which soon foundered. He then scratched a living as a door to door clothing salesman before being promoted to retail manager. Eventually he returned to factory life doing semi-skilled and labouring jobs in machine shops and foundries.
The Family Man
At the age of twenty-two Jess began courting a local girl, Ivy May Smith. She was a minerís daughter , one of five whose parents had also moved from the Black Country, attracted by the better jobs and housing prospects. The Smithís were God-fearing stock, lay preachers and pillars of the local Stockingford Methodist Church, where Jess and Ivy were eventually married on Boxing Day 1933. A son Jeffrey was born in 1935.
A still-born boy followed, then a girl who tragically survived only a few hours. The problem was discovered to be blood incompatibility involving the Rhesus Negative group. In 1943 new research in America offered a chance of success by giving complete blood transfusions to premature babies. I was born at the Queen Elizabeth, Birmingham on July 6th 1944 by Caesarean section about two months premature. Dad was so frantic he did not expect me to survive and as the previous two were not named he had me registered as William before Mum had a chance to recover from the operation. Mum hated the name and poor Dad took the full blunt of her anger. I wonít tell you what Mumís choice was but Iím glad Dad got there first!
Mumís pregnancy left a legacy. Like my sister before me I have a congenital condition called Scolosis Ė a deformity of the spine and deafness. My deafness was discovered four years later when an alarm clock on the mantelpiece went off unexpectedly while I was playing with my toys. Dad rewound the alarm and set it off again behind my back, which still produced no reaction. This confirmed the doctorís suspicion that I had been deaf since birth.
These events brought Dadís early experiences back full circle and he was to play a crucial role in my further development as a child. He organised every possible activity he could think of such as taking me on camping trips at least three times a year, picnicking at most weekends and encouraging my participation in any construction work around the house in which he happen to be engaged. He taught me to drive before I was ten years old and encouraged me to practice on private land even though I could hardly reach the foot pedals. Between us weíve built garden sheds, extensions to the house and caravans out of scrap, amongst many other projects. He has been a good father to me, he had the ability to encourage me through his enthusiasm without pushing me too hard and I love him for it.
My fondest memories of him
Dad took Mum and I camping every Easter, Whitsun and summer holidays until I left school. We had converted small vans into dormobiles (simple caravanettes). These include a Morris Minor van, a Bullnose Morris and a Bedford van with side windows. He made wooden benches and fixed them to the sides with a table in the centre that would drop down to make a large bed. All our gear packed away tidily into the storage space under the benches. I used to sleep in a large ex-army bell tent, which he bought for a couple of quid. This tent was thick, heavy, snug and warm, and if that wasnít enough he would put up a flysheet over the entrance which would house all the cooking and washing facilities. We had a tin trunk for storing bedding and sleeping bags during transport which turned on itís edge and with a couple of shelves inserted would serve as a food store for the duration of our stay. Dad was very inventive and an amazing dab hand at creating useful objects from absolutely nothing.
Another of my many memories is that he had, and still has, a Brownie box camera, which he bought in the 1930s. When I was about thirteen, he let me use it to take some pictures for the first time. He was so impressed with my photographs (so was I, in fact I was amazed!) that he bought me a brand new Brownie box camera for my fourteenth birthday, an expensive present for him in those days. This proved to be the first step of a career in photography which was to last nearly all my working life.
Too active to retire
Dad became very restless after being forced to retire at the age of sixty-five. He took a part time job in a factory doing odd jobs and maintenance work. At the same time he was doing voluntary work as youth leader at the Methodist Church where he was also the caretaker. When he was working Mum did all the cooking and housework, but Dad took over that role the moment he was officially retired. And as if he did not have enough on his plate, he made daily visits to his sister Lily, whose husband has recently died. She was frail and lonely and Dad would clean her house every morning. Annie had died a few years earlier after a long illness brought on by a massive stroke. Lil (as we called her) made great demands upon Dad, but he would willingly do all that she asked of him, because she was his sister, and Dad felt under an obligation to look after her. Her mostly unreasonable demands took their toll on Dadís health. He stubbornly refused to take things easier, despite many warnings.
When Lil died in 1996 Dad found that he had an unaccustomed amount of free
time on his hands and was unable to relax. That is when the symptoms of Alzheimerís
disease first became noticeable. He suffered some memory loss and his sense
direction became confused. These afflictions unsettled and frustrated him. His
circle of contemporary friends and family began rapidly to diminish, and when
his wife died in 1989 life became very difficult for him. For company, he began
to make daily visits to Emma, a life-time friend from Chapel. By this stage Emma
was housebound with arthritis and after lunch each day Jess embarked on a two
miles walk to visit her, making the return journey at dusk.
By 1998 he very seldom knew who I, or my brother, or Emma,
deterioration had proceeded with frightening rapidity. A period of stability
would be followed by another quick regression, and this process would constantly
repeat itself. His memory became like a diary from which most of the recent
pages were constantly being torn. What for him were his most current memories
were in fact being dredged up from further and further back in time. This was
sad, but could also sometimes be hilarious; for instance, he would suddenly
break out into the middle of a conversation which had actually taken place some
time in the past. Then I would have fun figuring out which year or period of his
life he was talking about. He became unable to comprehend the passing of time
and often did not know what time of day it was, and couldn't derive clues from
dark skies or sunlight.
My struggle to cope
These changes in Jess's personality had at first been so gradual that, with my day to day proximity to him, they had barely registered with me. However my brother, who lives two hundred miles away, noticed a marked change between visits. This prompted me to seek the involvement of the social services department, from where I was told that Jess was showing all of the classic symptoms of Alzheimer's disease. I had never really heard of this before and didn't understand the implications and effects. The steps that the disease would take as it progressed were explained to me, and suddenly the future looked bleak and terrifying. I was deeply shocked. Social services arranged a visit from a care worker each morning and gave me some further respite by finding places for Jess in day-care centres two days per week. At around this time my own physical disabilities made it impossible for me to carry on working and I took on the responsibility of being Jess's carer. Social services made sure that both I and Jess received our full financial benefit entitlement and this made it possible for Jess to carry on living in the home he had known for nearly sixty years.
Eventually his sense of time deteriorated further. The time at which he would choose to go to bed for the night gradually crept forward from 9 or 10pm to as early as 4pm. Consequently he would get up earlier, usually in the middle of the night, and then sit in his favourite armchair and fall asleep again without remembering to turn on any heating. Because I am deaf I could not hear him wandering about in the night, and in the morning I would often find him asleep in a draughty and almost freezing room, which caused me fears of him suffering hypothermia. On several occasions I found the room full of gas when he had tried and failed to light the fire. He had long before lost his sense of smell and would not have been aware of the danger. We were both lucky not to have been gassed or blown to smithereens. To prevent such disasters I had to replace our perfectly serviceable gas fire with a model with an automatic shut-off valve, but this failed to solve all the problems because he was never able to light the new model. The only solution left to us then was to blow what small savings we had on the installation of a full central heating system.
These problems resolved, the gas hob and electric oven presented their own dangers. The hob had automatic ignition but in time Jess forgot how to operate this and would turn on the gas and then go off searching for matches. Although I tried to keep matches out of the house he still managed to have them, I never knew how. Once he had the gas lit he would decide to cook. He would put a saucepan containing vegetables on the gas but forget the water, or alternatively forget that he was cooking until long after the saucepan had run dry, in either case leaving me a mess of molten metal to clean up. Even greater messes ensued when he put plastic tubs of butter into the electric oven to soften and then forgot about them. It would take me days to scrape the residue from the cooker and the kitchen floor. He was of course only trying to be helpful. It was difficult having to restrain him from doing things because of the dangers he was causing when at the same time it was obvious that he needed the motivation of being active. Achieving a proper balance was a problem for me and I'm still not sure if I got it right, didn't perhaps at times over-react.
A less harmful but equally frustrating problem was a growing inability Jess had to replace food and other household items in their proper place so that I could never find anything. Before his illness he would sometimes play chess with me. Now he could no longer do that, but this new activity seemed unwittingly to take on the nature of a game, one that I should perhaps patent and market! I soon learned that the dustbin was the first place to look, but after that it was anyone's guess.
His visits to Emma became another area of anxiety concerning his security and safety. After his early lunch he would telephone Emma to warn her that he was on his way, walk the two miles there, drink tea and play cards, then return at 4pm, which he considered to be his bedtime. This was a good activity for him, one that I encouraged, it kept him fit and active and sociable. But the time came when he would often forget where he was going, would become lost. On occasions the police would find him wandering the streets and take him to the hospital, from where I had to collect him. The police were very pleasant about this, but to avoid further embarrassments of this sort it was clear that the walks now had to stop. For a time I drove him to Emma's house and collected him later, but then he would grow anxious about getting home and would leave long before it was time to collect him, which eventually caused the re-involvement of the police. On the last occasion this happened the facts were much worse. He had wandered into traffic and been hit by a car, and although not badly hurt suffered multiple cuts and bruises and had to be hospitalised for a time. After that I stayed with him until he was ready to return home, but the anxiety he felt when away from his home environment got much worse and he was stricken with a need to return almost as soon as he had arrived. This effected Emma's nerves and the visits had to cease, another major milestone in Jess's decline.
To stop him wandering and doing harm to himself and others it became necessary to keep him locked in. His home became a virtual prison. Keys were taken from him and hidden, and dead-locks added to all outside doors. He would insert all sorts of objects into keyholes in an attempt to open doors and I would often have to spend some hours un-jamming the locks. Although not a violent man he would now vent his frustration by shouting at me in anger. This became so bad that my nerves and blood pressure were affected, afflictions for which I have needed medical help ever since. Social services increased Jess's day-care sessions to three days per week to take some of the pressure off me. They then organised some temporary residential respite periods in homes, which helped to alleviate my stress further. But Jess's condition continued to deteriorate and he became incontinent. Although he had by now been offered permanent residential care I had been unable to bring myself to this step, but when he used the coffee table as a toilet I realised that I could no longer carry on. Because of the severity of the situation a residential place was found for him very quickly once I had given my approval.
Life in the Home and my Personal Observation
Dad has been institutionalised for a year now. I visit him virtually every day, and each time it breaks my heart. He doesn't understand why he is there, why he can't return home. It's impossible to explain to him that it is all in his best interests, that there are no alternatives any more. Often now he is asleep when I arrive and resists my efforts to wake him, so that he doesn't know that I have been. Other times I find him wandering endlessly around the corridors, not knowing where to go, looking lost and confused. Most of the other residents have the same reactions, want to return home all the time, are constantly frustrated and deeply unhappy. The staff do all that they can to alleviate these symptoms, to make the patients more cheerful and happy, and I am full of praise and admiration for their dedication and devotion to duty. The home organises events and raffles in order to raise money, which is then used to take the residents on outings and boat trips. Those who benefit from these day trips seem to get a lot of enjoyment from them and welcome the break from their mundane routine at the home.
After what my Dad has been through and the way he took care of me during those critical years of my childhood I feel guilty for not being able to cope with his personal needs and freedom. I often cry myself to sleep and spontaneously burst out my emotional feelings in public. He had guts and the sheer determination to lead a full active life, a legacy he will leave behind in me.
Dad was found on the floor of his room one day in May, 2000. He had suffered a fall, we never knew how. He was hospitalised for several days, and remained in a semi-conscious state.
Returned to the home, he no longer wanted to eat or drink and, despite a brief recovery, he died peacefully after a few days.
JESSE BOSWELL, 16 August 1908 - 24 June 2000